A birthday doctor’s call

I hadn’t thought through that it would be his birthday when I confirmed the phone call with her. I guess when your son’s doctor says they need to speak to you, you don’t exactly “look at your calendar,” you just clear your schedule.

I knew it was going to be about, I thought anyway, but when the doctor says they “need to talk,” one very quickly goes from being sure to being filled with worry and dread. No stone left unturned on the path of worry. Luckily, because I am so damn experienced with this, I knew better than just letting the week end and trapping myself in a weekend full of unknown worries. So I emailed her back real quick, “Do I need to be worried about this convo?” and she replied, “This is about my circle back with the CHOP team. Please don’t worry!!!!”

So I didn’t. Doctors orders.

At our recent clinic visit, her and I had decided the best way to move forward was for her to discuss with CHOP how to proceed.She had said that watchful waiting seemed prudent and she just needed to check-in with CHOP on what that looked like by way of the study protocols.

The weekend was a lovely one and Monday rolled around fresh and surreal: Beaudin’s 10th birthday.

What a fucking gift.

For a while I never would have doubted his survival. Even after the cancer diagnosis. Remember, we had “the good one”? 94% survival! If anything, birthdays were a big triumphant “Can’t catch us cancer!” But as time went by and relapse came about, and then the unknowns of CAR T therapy success, and then frankly, too many of our cancer families getting terminal diagnosis updates, well, yeah, birthdays lately have felt like a damn battle cry.

Gramps and GV were in town from Florida which was such a birthday treat. We spent the morning at the Meow Wolf exhibit in Denver and lunching with GV’s son, Charley. Meow Wolf was fascinating, a true marvel of modern, experiential art and left 3/4 of our group nauseous and 100% of us over-stimulated. (I would recommend going kid-free and perhaps on a mind altering substance for top-tier enjoyment.) Anyway, we drove home from our busy morning and realized we would pull-up to our house the moment our call was scheduled to start. Perfect timing for a straight forward call.

Josh and I hurried upstairs to find a quiet spot. A quick update on all the things we already knew.

Which it was, I suppose, a quick update on all the things we already knew…but it never seems to get easier to hear that a group of professionals all have a professional opinion that goes something like, “We just don’t have the data for another path, and because of that the data we have says that Beaudin should proceed with bone marrow transplant.”

We knew that was the stance of the CHOP team per our conversation a couple months back, but last I had heard from our CHCO team they had supported a “wait and watch and let the disease show us what needs to be done.” But today the tune changed. Today, both groups had decided that without any data to support wait and watch, their opinion was that the most sure path forward was bone marrow transplant (BMT).

Josh and I, who had casually tossed ourselves down on our bed, expecting a quick chat, both shifted, stiffened, this would clearly be a longer conversation than we’d thought.

To make a long story, tolerable:

CHOP does not have data to support wait and watch. We knew that. Prior to this study, many children who did CAR T were at *the end* of their therapeutic options. If CAR T didn’t last, there was no option to observe. As the science developed, if the T cells didn’t persist, patients went to BMT right away. Not because they had to necessarily, but because CAR T produces a really good, deep remission that is needed for a successful BMT and not many are willing to pass up that opportunity in exchange for waiting to see what happens. Especially not when you are dealing with your 2nd or 3rd relapse and are desperatley praying something works to get your child into remission. You don’t look the CAR T gift horse in the mouth.

As such, there is no collected data on what happens when you do nothing. Doing nothing requires 1.) Risk- which parents are less likely to take with their children and 2.) No expensive pharmaceuticals that can fund the studies. So there is “no data” on waiting because it turns out that data costs money. Money made from expensive pharmaceuticals- like, for example, the CAR T pharmaceutical product that Beau has received twice that costs upwards of $750,000.

So there is no “scientific data” the teams are able to reference. Except there is Facebook, and my God it’s not a science database, but it is a collection of stories of real life humans who have real life kids who had real life CAR T and real life early B-cell return and in real life decided to wait and watch, and are in real life still in remission many real life years later.

So, yeah, there are no peer reviewed medical journals about how the wait and watch data pans out, but the lack of data doesn’t make data. It just points out what we need to know more about. And for whatever reason the anecdotal evidence easily discovered in parent support groups won’t dare even be mentioned by the team.

So, our doctor said that her and the CHOP team both agree BMT is the next, right step for Beaudin. We spoke for about 20 minutes about what that means, why we would choose it (or not), the slew (slew!) of side effects. We agreed that it was something we could discuss and perhaps should schedule a consult with the proper BMT team in Denver, if we were to go that route.

She affirmed that, “Although it is, by the data, the best choice, I can’t say it will be 100% successful for Beaudin and so I cannot in good conscience tell you that you must do it. If you want to pursue a ‘wait and watch’ path forward, I will support that, too.”

Plot twist. So she was saying BMT was the only data-backed way to move forward, but given even that it isn’t a sure success, she couldn’t tell us without a doubt to do it? It’s always shocking to recall that though this is my baby and his one, fragile life, we are working to heal him inside of a business enterprise with medical malpractice and best practice protocol ass-covering. She stated the “best practice” way forward and then put forth the nuance. The litigious nature of our culture is real shit when trying to make decisions for your child’s survival.

“Ok, so your medical opinion based on the lack of data for ‘wait and watch’ and the data for BMT is that we go to BMT, but knowing Beau’s case and our desires, it’s not like us choosing ‘wait and watch’ will keep you up at night?”

“No, no Betsy. To be clear, this will keep me up at night. I am always kept up at night.”

It felt like a warm matriarchal energy. She wasn’t frantic, she wasn’t panicking, but yes, she would worry over this.

“I will get push back from my colleagues in our next round table if the path we choose is watchful waiting. I am ok with that…but there will be push back. And, that being said, I shared the case with the head of BMT at Denver, and the head of CAR T at Denver and they both think that watchful waiting is a sound approach.”

There isn’t a path forward that doesn’t include worry.

BMT doesn’t mean a ticket off this hellish ride. It means a data-backed new roller coaster that is filled with it’s own (very real) side effects. It means another +/- 3 months in the hospital, full body radiation (and it’s side effects), infertility, a year of low immunity, and late term side effects like high risk of glaucoma and secondary cancers. Many kids that die during transplant die of side effects, not of cancer. Those are just a couple of the risks to BMT.

–

I could go on and on about the risks of BMT, the risks of waiting and watching, and how Joshua and I have played out every damn scenario over and over in our head, but to what end. We have decided that watchful waiting is the path we are on for now.

We will continue to check Beaudin’s spinal fluid and bone marrow every three months, per the study and then we will have an additional spinal fluid check in-between. Figuring that since his relapse was CNS (spinal fluid) to begin, we should check that space a bit more closely. As such, we will be back to Philladelphia mid-May for the month 9 tests, then a lumbar puncture locally in Denver end of June, then our 12-month, and final per the study, check in Philly in August.

Continue to believe with us that the future remains clear as day.

–

It just wasn’t the call I was expecting, really. And in hindsight, it wasn’t really new information. But as I moved through the rest of the day I was surprised that the weight stayed with me. To celebrate another year around the sun, the gift of survival, and then to hold the unknown future so close that in burns through your tight grip.

I got ready for bed that evening and thought about Beau’s birth day 10 years prior. I brushed my teeth and considered how I held his squishy body and believed with everything in me that this day would forever be one of celebration. And it is. Every year it is. But since cancer, since relapse, there is another energy that comes alongside the celebration. I suppose it’s the unfiltered energy of our mortality, the rawness of survival. Which in some ways feels like such bullshit. I just want to celebrate my sweet first born and instead I am wondering how many more birthdays we will have with him.

I washed my face and moved my hands over the wrinkles that I didn’t have 10 years ago, remembering back to that time when our life now would have been incomprehensible.

Cancer is such a thief.

I pulled myself together, put on my pajamas and walked in to Beau’s room.

“Bubba, the big 1-0! Can you believe you will never be single digits again.”

The look on his face was serious as he considered what I had, casually!!!, said. He curled into a ball and pulled him comforter over his head. I heard him begin to cry.

“Bubba… what’s wrong….” I inquired as I slipped in under the covers, into his fortress.

“I just don’t want to get older mom. I want to be a kid…. forever.”